Towards collaborative tinkering in contraceptive consultations: Negotiating side-effects in contraceptive care

Abstract

Patients’ online information-seeking and sharing has sparked worries about medical misinformation and declining trust in biomedical professionals. At the same time, scholars advocate for including patients as knowers in the clinical encounter. Yet we lack empirical insights into the differing ways care providers and patients substantiate health-related knowledge. This article thus examines (1) how both groups substantiate claims about contraceptive side-effects, (2) the ways their substantiation processes differ and (3) how we can navigate this epistemic tension in contraceptive care. I draw on data from nine interviews with Dutch contraceptive care providers (one nurse practitioner, one gynaecologist and seven general practitioners) and 17 contraceptive users, observations of 11 contraceptive consultations in the Netherlands and analysis of Dutch clinical guidelines. Results reveal that patients substantiate their claims through combining embodied modes of knowing with self-experimentation as well as validation through social media exchanges. Care providers switch between two complementary approaches: demarcating biomedical knowledge from non-scientific claims and clinical tinkering. I show that epistemic tensions between provider and patient may arise because the two groups have differing definitions of what a side-effect is and differing evaluations of information shared online. Based on these findings, I argue that care providers invalidating information shared online may contribute to patients’ growing distrust in biomedical authority while collaborative tinkering may provide a common ground for care providers and patients to co-create knowledge.

‘Doctors don’t understand’

Well, my experience with my doctor is that. . . they are totally. . . . Well, my doctors are. . . [pauses, thinking] Okay, this is my interpretation: [. . .] I don’t have the feeling that they [my doctors] understand what the impact is of hormones on a woman’s body. Or at least on my body. (Interview, Laura, emphasis in original)

When Laura, a woman in her 30s living in Amsterdam, talked about her decision to quit hormonal contraception, she told me that the relationship with her general practitioner (GP) was negatively affected by their disagreement concerning side-effects. The GP said what she was experiencing were not side-effects but rather complaints unrelated to contraceptive use; Laura thought otherwise. We see here a form of epistemic tension (Haw et al., 2018): the GP’s knowledge on this subject was at odds with Laura’s way of understanding the effects of her contraceptive use.

Scholars understand epistemic tension in medical care practice to be the result of bias against patients, medicalization and marginalization of patient knowledge (Greenhalgh et al., 2015; Pot, 2022; Wardrope, 2015). Research on contraceptive consultations, in particular, documents how patients experience dismissal of their knowledge and experiences with contraception (Berndt and Bell, 2021; Stevens, 2018). To include patients as knowers in the clinical encounter, scholars argue, we need to reduce if not prevent such biases and epistemic marginalization (Greenhalgh et al., 2015; Pot, 2022; Wardrope, 2015).

Without denying the role of bias and social hierarchies, this article focuses on how everyday knowledge practices give rise to epistemic tensions between care providers and contraceptive users. I analyse the knowledge practices of both and compare the two groups’ ways of knowing side-effects. I ask: How do contraceptive care providers and users substantiate claims about side-effects of a contraceptive? How do their substantiation processes differ? And how can we navigate this epistemic tension in contraceptive care?

Substantiating claims about side-effects entails negotiating, investigating and assessing data available to care providers and users to determine whether a complaint can be attributed to a contraceptive. Through this process, care providers and users substantiate a complaint as a side-effect. This knowledge may then be used in contraceptive decision-making.

In the analysis, I draw on literature on tinkering (Kingod, 2020; Mol, 2006; Mol et al., 2010) to draw attention to the specific practices of knowing of both care providers and patients. Clinical tinkering refers to experimentation intended to determine if and how a treatment addresses a complaint. The medication practices of patients, for example adjusting or discontinuing medication on their own terms such as described by Conrad (Conrad, 1985) can be seen as a form of clinical tinkering at home. Tinkering involves knowing in practice; it is not a form of knowledge, but rather a process to discover a treatment’s effects on an individual. As this article shows, epistemic tension may arise as a result of differing ways groups substantiate their knowledge claims and define what is a side-effect. At the same time, care providers’ ways to substantiate claims may not be opposed to those of patients. I use the concept of tinkering to explore possibilities for fruitful epistemic collaboration between care providers and patients.

This article contributes to discussions on how to navigate epistemic tension in contraceptive care. Analysing clinical encounters as epistemic settings, as I do in this article, enables practical recommendations to help alleviate the on-going tension between care providers and contraceptive users during contraceptive consultations (Berndt and Bell, 2021). Moreover, as knowing side-effects is relevant for informed decision-making, epistemic collaboration between care providers and patients enables shared decision-making. Shared decision-making, along with patient-centred contraceptive counselling, is linked to patient satisfaction and adherence (Dehlendorf et al., 2016, 2017; Zapata et al., 2018).

The next section of this article gives an overview of literature on knowing side-effects, epistemic tension between care providers and patients and knowing as tinkering. I then outline the methods of data collection and analysis. The results are presented in two sections analysing contraceptive users’ and care providers’ knowledge practices. The subsequent section compares the two groups’ ways of knowing and identifies obstacles to epistemic collaboration. Then, I compare these findings to those of others studying epistemic tension and provider-patient interactions concerning contraception. Here, I show that care providers may, unknowingly, contribute to epistemic tension, ultimately exacerbating the growing distrust in biomedical authority. I advocate for collaborative tinkering in contraceptive consultations to counteract epistemic tension and provide a common ground for care providers and patients to co-create knowledge.

Knowing contraceptive side-effects: Tension between care providers and patients

The word ‘side-effect’ is part of our everyday vocabulary, referring to complaints arising due to treatment. But what a side-effect is exactly and how it becomes known as such is not straightforward. How do we differentiate between an experienced complaint caused by a treatment and simply a complaint unrelated to any treatment?

Gunnarsson and Wemrell (2023a, 2023b; Wemrell and Gunnarsson, 2023) explore the knowledge practices of Swedish care providers and patients surrounding non-established side-effects of the copper IUD. They (Gunnarsson and Wemrell, 2023a) argue that the patients’ knowledge practices entail an ‘active, scientifically oriented process of knowledge formation’ (p. 175) rather than unscientific or lay knowledge practices, as they engage in ‘identifying, assessing and inter-relating existing scientific resources deemed relevant to their cause’ (p. 184). To describe how contraceptive users substantiate the link between a complaint and their contraceptive device, Gunnarsson and Wemrell (2023b) identify three stages of experiential knowing. The first, somatic knowing, is explained in terms of a ‘gut feeling’ (p. 1489) something isn’t right associated with use of their IUD. The second, collective validation, entails the process in which users find others experiencing similar issues through social media. The last, self-experimentation, is understood as the stage when ‘the body is made into an experimental laboratory where hypotheses are tested’ (p. 1493). Research on self-experimentation mediated by online health communities (Kempner and Bailey, 2019) suggests that, when people are members of online communities, self-experimentation is itself a collective practice. The link between the complaints and the treatment is thus substantiated over time, by combining various, individual and collective, epistemic elements.

Most qualitative studies examining care providers’ knowledge of side-effects focus on provider-patient interactions or counselling on side-effects. Disagreements about side-effects and non-recognition by care providers prevail (Berndt and Bell, 2021; Littlejohn and Kimport, 2017; Stevens, 2018). Though they may underwrite a non-hierarchical, patient-centred model of care, care providers still overrule and delegitimize patients’ embodied knowledge and worries about contraceptive side-effects (Berndt and Bell, 2021; Stevens, 2018). Littlejohn and Kimport (2017) show that during contraceptive consultations care providers tend to emphasize the likeliness of positive side-effects while downplaying negative ones.

Two recent studies (Donnelly, 2023; Wemrell and Gunnarsson, 2023) frame the disconnect between contraceptive care providers and users in terms of epistemic injustice. To mitigate distrust, tension and disagreement between the two groups, Wemrell and Gunnarsson (2023) suggest care providers cultivate epistemic humility (Buchman et al., 2017; Wardrope, 2015).

Knowing as tinkering in care practice

The tension between care providers and patients is often understood in the literature as opposing forms of knowledge, such as biomedical versus embodied or professional versus experiential. But contrasting the two groups’ ways of knowing eclipses the complexity of knowledge practices (Pols, 2012, 2014). In Gunnarsson and Wemrell’s (2023a) aforementioned study, for example, users who have embodied experiences of side-effects from the copper IUD also draw heavily on existing scientific resources. Both groups’ knowledge practices may include biomedical ways of knowing and measurements as well as embodied and experiential ways of knowing.

Inspired by studies on care as tinkering (Kingod, 2020; Mol et al., 2010; Pols, 2010, 2014), I reject the dichotomy of expert knowledge versus lay knowledge. Instead, I look at the everyday practices of people who know side-effects. I use the concept of clinical tinkering to describe the process of experimentation needed to see if and how a treatment addresses a complaint. Tinkering requires biomedical knowledge but also practical know-how. Tinkering involves knowing in practice; it is not a form of knowledge, but a process in which people attempt to learn how a treatment works for, and may or may not fit with, the individual.

Methods

The article draws on 26 interviews (17 contraceptive users and nine contraceptive care providers), seven user diaries, five contraceptive decision aids, one clinical guideline on contraception, six training sessions for care providers and 11 contraceptive consultations. All data were collected as part of a larger research project on the uptake of digital tracking technologies to prevent pregnancy in the Netherlands. I collected the data between 2018 and 2022 and subsequently coded them. All participants provided verbal informed consent.

Setting

Use of hormonal contraception was historically high in the Netherlands, but has been declining in the past decade (van der Vlugt, 2024). This decrease coincides with a growing wariness of hormonal contraceptives in the Netherlands and beyond (Algera et al., 2024; Le Guen et al., 2021).

Participants

Users were recruited through local and international social media networks. Participants were purposefully sampled if they had used an app as a way to prevent pregnancy. The sample thus included an overrepresentation of contraceptive users who experienced side-effects, as they chose to discontinue pharmacological contraceptives often citing side-effects as a motivation. Participants were between ages 23 and 36 (median: 29). All but one lived in the Netherlands during the interview.

Care providers were approached via email through my professional network; snowball sampling; or online search engines or online lists of practitioners. For the last group, search terms were used to target specific types of care providers. Care providers were sampled purposefully to include a diverse group. All but two – a nurse practitioner and a gynaecologist – were GPs. GPs remain the first access point to contraceptive care for most patients in the Netherlands. The nurse practitioner provided contraceptive counselling as part of weekly sexual health office hours.

Interview procedure and diaries

User interviews were semi-structured and focused on users’ contraceptive history and their contraceptive app use. Interviews lasted between 33 and 114 minutes (median: 52 minutes). Some users agreed to keep a solicited diary (Bartlett and Milligan, 2015) documenting their everyday contraceptive app and social media use.

Provider interviews were semi-structured, focusing on how they practice contraceptive care and if and how they include contraceptive cycle-tracking in their counselling. Care providers had varying levels of experience, from being a resident-in-training to 37 years of work experience (median: 22 years). These interviews lasted between 36 and 62 minutes (median: 45 minutes).

All interviews were audio-recorded, anonymized and transcribed verbatim.

Observations

I observed 11 consultations of four care providers. Six consultations were with the nurse practitioner; two occurred by phone due to COVID-19 restrictions and were audio-recorded by the provider using an audio set-up for residency training. The other nine were observed in person and recorded as field notes.

Data analysis

Interview data, observations and diaries where analysed using a praxiographic approach (Mol, 2002), which entails coding what people do or what they say they do and the materials people use. During a first coding round, all excerpts mentioning hormonal contraceptives and/or side-effects were labelled. All practices and themes relating to knowing were also labelled (e.g. ‘finding patterns’, ‘demarcating’, ‘certain’, ‘uncertain’, ‘myths’). In a second round, all data excerpts relating to side-effects, knowing and hormonal contraceptives were reanalysed, comparing findings among users and care providers. After coding and analysis, the data about contraceptive users’ ways of knowing side-effects showed strong similarity to the experiential knowing stages defined by Gunnarsson and Wemrell (2023b). I therefore used somatic knowing, collective validation and self-experimentation to further the analysis albeit not in that same order.

The interview with Laura, excerpted in the article’s opening, provided the most elaborate description of a user’s history and epistemic negotiations surrounding contraceptive side-effects. I use her story to illustrate how someone who experiences a side-effect may substantiate the link between a complaint and a contraceptive. Stories of other participants supplement that analysis.

The Ethics Advisory Board of the Amsterdam Institute for Social Science a the University of Amsterdam approved this study.

Contraceptive users’ ways of knowing side-effects

In interviews and diaries users used three practices of substantiation: 1) somatic knowing, 2) self-experimentation and 3) collective validation (Gunnarsson and Wemrell, 2023b).

Somatic knowing: ‘I had this feeling’

I had [. . .] yeast infections [all the years while on birth control pills], and I never had any since [I stopped the pill]. And they [my doctor] says: ‘There is no relationship between yeast infections and the birth control pill.’ Like, yeah well: I am fairly sure there is, in my case, and they were like: ‘No, that’s nonsense.’ Literally. [. . .] ‘No that is nonsense, there is no connection.’ Really, that’s what they said. (Emphasis in interview)

It was clear from how Laura recounted the disagreement, including the tone of her voice, that she felt outrage when her GP denied hormonal birth control was causing yeast infections. Though Laura expressed certainty about the link between the two, it was difficult for her to pinpoint what made her connect them.

I’ve used so much different stuff [to stop recurring yeast infections]. Nothing worked, nothing, nothing ever worked! [. . .] I don’t know why I made the connection in my mind of stopping [birth control] and [the yeast infections]. . . I’m not sure. . . I had this feeling, I don’t know, maybe I read something about it? So I just wanted to see what my body did without the hormones. (Emphasis in interview)

Laura’s ambiguity about exactly what happened was similar to that of other participants who spoke in terms of somatic knowing (Gunnarsson and Wemrell, 2023b), describing an inkling or gut feeling as what made them consider discontinuing contraception. Cindy cited ‘a sense’ that led her to consider stopping hormonal contraceptives: ‘because I did have a sense that I was really bothered by those hormones’. Antonija said: ‘I [. . .] felt very strange and I couldn’t put my finger on it’.

Self-experimentation: ‘I never had the yeast infection since’

After some time of having ‘this feeling’ and discussing the subject with some friends, Laura decided to discontinue hormonal contraception. ‘So I thought: let’s quit this. And then, as of that moment, I have never had a yeast infection since. never’, she shared (emphasis in interview). The yeast infections cleared up a few days after discontinuing hormonal contraception, following years of trying many over-the-counter and provider-prescribed treatments. Upon entering a new relationship, however, Laura restarted hormonal contraceptives. This experience enabled her to further substantiate the link between contraceptive use and yeast infections.

Ta-da! I immediately – I kid you not, after two weeks [of restarting] – I get a yeast infection. And in the end, I quit again, and it resolved. And I have not been on birth control ever since, so that’s four years now, I think. [. . .] And I don’t have yeast infections anymore. (Emphasis in interview)

The initial gut feeling thus turned into a more substantial link through self-experimentation (Gunnarsson and Wemrell, 2023b; Kempner and Bailey, 2019). Laura kept track of her bodily experiences on and off the contraceptive to see if her complaint would also come and go. In other words, Laura tinkered: she tried something to see its effects and if and how the treatment fit her body. Exclaiming ‘ta-da!’ underscored what she deemed irrefutable empirical grounding for the link between the yeast infection and the contraceptive.

Laura’s experience echoes that of several women in Gunnarsson and Wemrell’s (2023b) research for whom ‘the dramatic shift observed in their health when removing their IUD served as ineluctable evidence that it was the cause of their illness’ (p. 1485). Though less pronouncedly than Laura, other participants spoke in terms of immediate shifts. Following her IUD removal, Marijn recalled, ‘I really felt my entire body, I felt my uterus [sighs deeply] just relax!’(emphasis in interview). In her diary, Jasmina described how she felt the day after her IUD removal, writing: ‘I find it unbelievable. Since the IUD has been removed, I suddenly became aware of the absence of a continuous mild cramp in my uterus’. Anna had an inkling that she was constantly bloated due to hormonal birth control pills, saying: ‘So then I got off [birth control] and immediately I was completely rid of that bloated feeling’.

Collective validation: ‘I feel strengthened by the fact that other women as well share these stories’

The initial gut feeling is thus turned into a more substantial link through self-experimentation. Participants gathered online information to further substantiate the link through collective validation (Gunnarsson and Wemrell, 2023b). As Laura cites:

I know there is a connection, for me there is. And when you read about it online, like SO many women have that. So many women have yeast infections [due to hormonal contraceptives]. [. . .] And also friends [. . .] having yeast infections, their whole life and then when they stopped, taking birth control, it’s gone. [. . .] My doctors keep telling me it’s nonsense. Well, yeah, you can say it’s nonsense, but it’s like: I’m the guinea pig, you know. We’ve tried it – the result is clear. Maybe [. . .] it doesn’t hold for everybody, but for me, I’m pretty sure, that’s the way it works. So you can tell me anything different, but I not going to [trust the doctor on that]. . . Hormones really affect me, really affect me. And then I feel strengthened by the fact that other women as well share these stories. And then I know, it’s not only me and then you even feel more strong about it. And that you are [in the right], by interpreting and acting upon it. And for example, to say no to some advice when your doctor says ‘Do this.’ And I’m like: Nope! (Emphasis in interview)

This quote illustrates different elements that Laura used to substantiate the link between hormonal contraception and yeast infections. She spoke in terms of a lab experiment, with herself as its guinea pig. She also found collective validation in similar stories of others, making her ‘feel more strong about it’. Again, Laura stressed that she may be the exception and thus individualized her complaint; but still, the connection held for her.

Similarly, Camilla, a participant who said she experienced low libido due to her hormonal implant, joined a social media group dedicated to users of the implant. It was an opportunity to ‘see if anyone was having the same side-effects that I did’, she said. ‘So I basically joined to see other people’s experiences’. According to Nedelya, ‘many women reported panic attacks and anxiety problems and depression and things like this’ while on hormonal contraceptives, leading her to link her mental health issues to her contraceptive use. ‘That’s one of the reasons I quit the pill’, she explained.

Contraceptive effects: Distinctly medical or elusive and phenomenological?

In Laura’s story, the recurring yeast infection is a relatively clear, delineated complaint that readily resolved upon discontinuation of the contraceptive. Other participants also cited distinct complaints, such as nausea or libido loss, as being caused by contraceptives. But in many cases, the complaints associated with contraceptives were not so distinct. These less pronounced cases were verbalized in ways strongly resembling how somatic knowing is verbalized; when users recounted the initial phase of somatic knowing, they spoke in terms of having a ‘sense’ or ‘feeling’ they may be ‘bothered by’ the hormones.

Somatic knowing as a ‘gut feeling’ that is ‘imprecise’ (Gunnarsson and Wemrell, 2023b: 1489–1490) or hard to pinpoint reflects the elusive character of the side-effects themselves. For example, Antonija described how she restarted a hormonal contraceptive, saying:

I felt very strange for quite a while. [. . .] I didn’t feel like myself as if, yes, I wasn’t in my body. I really couldn’t explain it very well, [. . .] I felt very strange and I couldn’t put my finger on it.

Other participants used phrases such as ‘not feeling like myself’ or ‘feeling uncomfortable in my own skin’.

This uneasiness was sometimes also linked to elements of daily life, such as work and education. Marijn described feeling depressed while in a relationship that ‘didn’t suit me at all’ and an educational program that she felt ‘completely done with’.

Everything was misery and hardship. Yes, and then I thought: Well, I think I just need to remove it [the IUD]. And the moment that it came out, I really felt my entire body, I felt my uterus [sighs deeply] just relax! And then I realized that I had been feeling all along that there was something [the IUD] in my body that didn’t belong there, and that’s such a bizarre sensation. And then I thought, never again. I will never have anything like that, no, no more intrusions in my body. (Emphasis in interview)

Still, Marijn could not trace the exact effects the contraceptive had on her. She used metaphorical language, referring to ‘something’ in her body that ‘didn’t belong’. The ‘bizarre sensation’ in her uterus felt like holding her breath until she had her IUD removed and could relax, communicated to me by letting out a sigh of relief. Though she did not make explicit how they were related, Marijn’s story connected the sensation in her uterus with the uneasiness she felt with her boyfriend and her educational program.

Despite the yeast infection being a distinct complaint, Laura also used metaphorical language to describe discontinuing her contraceptive. She referred to the alleviation of complaints that, at first glance, seemed unrelated to birth control.

And for me it was like, as if a veil had been lifted [when discontinuing hormonal contraception], you know. As if I can generally feel more. I can generally experience sounds and colours more intensely, and just have a very, more direct experience of the outer world.

Referring to sounds and colours, Laura described a phenomenological experience of her relation to the world. These descriptions are a departure from the side-effects often found in information leaflets accompanying hormonal contraception, such as headache, nausea, abdominal pain and breast pain.

Care providers’ ways of knowing side-effects

In interviews and observations of contraceptive consultations, care providers used two practices of substantiation: (1) demarcating between biomedical knowledge and non-scientific claims and (2) clinical tinkering.

The activity of demarcating legitimate knowledge from pseudo-facts, also known as boundary work (Gieryn, 1983), prevailed in interviews. Clinical tinkering, on the other hand, prevailed in contraceptive consultations. I correlated this with the different epistemic positions of the provider across settings. In interviews, care providers were addressed as medical experts with professional opinions on the topics of discussion. A knowledge deficit or misinformation model (Gunnarsson and Wemrell, 2023a: 176) accordingly predominated; care providers often mentioned patients’ lack of knowledge and skills around contraception. When it came to side-effects, care providers tended to take on the role of mythbuster (Stevens, 2018) or truth-keeper, aiming to guard safety and minimize risk.

By contrast, in contraceptive consultations, care providers’ knowledge practices tended to be collaborative, actively including patients in the epistemic process. Here the provider took on the position of co-experimenter, discovering the effects of hormonal contraception together with the patient.

Uncertainty about side-effects

In medical training and contraceptive guidelines, statistical ways of knowing are deemed essential for understanding the effects of contraceptives. Statistical data is usually presented in tables. For example, in the Dutch College of General Practitioners’ (NHG) contraceptive guideline, a table compares the increased thrombogenic effects of types of combined contraceptives; another compares contraceptive methods on the basis of their efficacy to prevent pregnancy (Nederlands Huisartsen Genootschap, 2020). These tables are based on systematic reviews that refer to clinical trials and population surveys as empirical evidence for the statistical data. In clinical trials, side-effect statistics reflect the chance someone may experience a complaint when using the treatment. If the group receiving treatment, in contrast to the placebo, experiences headaches or thrombosis in a significantly increased rate, these unintended effects are said to be caused by treatment. These statistics are also included in information leaflets accompanying treatments. ¹

When unintended effects are considered severe, ² the NHG guideline prescribes that care providers account for such risks in contraceptive care. To avoid severe reactions to a treatment, care providers check for contraindications. If other factors (e.g. age, smoking status and certain diseases that run in a family) are present, the provider is unlikely to prescribe a treatment that increases the risk for related adverse effects. This is the framework of accountability: good care ought to be effective and safe (Mol, 2006: 406).

In reality, things are messier than numbers in the table. What counts for a population may not always apply to an individual patient. An inferential gap exists between population-based evidence and the evidence applied to a particular case; that a treatment may on average work on a population better than a placebo does not necessarily mean it will work on an individual patient (Upshur, 2005).

To add to the complexity, people may experience side-effects because they expect to. The biomedical literature calls this the ‘nocebo effect’ (Colloca and Miller, 2011), describing clinical trials where people on the placebo experience similar side-effects as people receiving treatment at a rate higher than the group receiving no treatment. The placebo group receives the same pre-trial warnings as the treatment group – and the warnings may produce exactly these complaints among patients receiving the placebo (Colloca and Miller, 2011).

Demarcation between biomedical knowledge and non-scientific claims

Uncertainty about side-effects impacted how care providers approach contraceptive care. One way to respond to this uncertainty was to use biomedical evidence as a basis for contraceptive decision-making. In doing so, care providers juxtaposed biomedical evidence with myths and misinformation about side-effects, which in interviews they regularly referred to and correlated with patients’ growing wariness towards hormonal contraception – often understood as pushed by social media.

Sometimes care providers mentioned the nocebo effect vis-à-vis patients’ desire for hormone-free contraceptives.

Nowadays everything is attributed to it [hormonal contraception] – [. . .] mood swings [. . .] weight gain, [. . .] headaches – [. . .] so they [patients] have the idea that [these complaints] are related to the pill. [. . .] There’s definitely a group that [. . .] has a kind of reverse placebo effect, and thinks: ‘Okay, now I’m going to take hormones, and, yes, indeed, I actually experience all the side-effects listed in the package insert.’ [. . .] When something about hormones is published in magazines like Linda or Vriendin [Dutch women’s magazines], I just see an increase in women coming to my office, saying, ‘Yes, I use that pill, and I actually want something different than these hormones.’ (Dr. Schoon)

Dr. Schoon referred to the nocebo-effect as ‘the reverse placebo effect’. Use of the word ‘attributed’ is significant because mood swings, weight gain and headaches being caused by hormonal contraception was considered an ‘idea’ rather than a reality. Dr. Schoon thereby attempted to distinguish between the false correlation of a complaint to a treatment from an established side-effect. According to Dr. Schoon, patients may think they are experiencing side-effects when the complaints are actually caused by reading package inserts or women’s magazines.

Dr. Bloem, a resident-in-training, also linked patients’ preferences for hormone-free contraceptives to social and mass media.

Very often you hear: ‘No, I don’t want hormones because I don’t like hormones.’ And if you ask them why, they don’t have a very good answer, but usually [they say]: ‘Yeah, that one book I read, or that blog I read.’ That’s what they come back to.

Dr. Bloem deemed patients’ response as not ‘a very good answer’, implying that their preference needs more justification than the knowledge derived from a book or a blog, which may be of questionable quality. Both Dr. Bloem and Dr. Schoon considered stories about hormones in women’s magazines, blogs an books problematic because they contain misinformation or myths about hormones.

Care providers thus demarcated biomedical knowledge by placing it in opposition to non-scientific claims. This could include stories spread by social media, myths and misinformation, intuition or feelings and dogmatic claims.

Um. . . [. . .] that anti-hormones [sentiment] sometimes also leads to somewhat magical associations [. . .], you see, because they [patients] are very much against hormones, while the body itself naturally produces hormones as well. So it’s not so black and white, so to speak. It tends towards a kind of absolutism [. . .]. So it’s not entirely medically justified. [The preference of] ‘I don’t want hormones,’ well, then I think, your own body produces them [hormones] every month. [. . .] [Patients] hold very firmly to the fact that they don’t want hormones without realizing that their own body produces three times as much every month. (Dr. De Wilde)

Dr. De Wilde held up ‘medically justified’ knowledge to counter the more ‘magical’ and ‘absolutist’ position of patients who reject hormonal contraceptives.

As part of myth-busting (Stevens, 2018), care providers cited the desire to correct the patient’s ‘misinformation’, ‘false assumptions’ or ‘incomprehension’. As mythbusters care providers referred to valid, evidence-based information recorded in medical textbooks and guidelines. Meanwhile, they viewed patients who were wary of hormones as ‘misinform[ed]’ and having ‘false assumptions’ because of online health information seeking.

Clinical tinkering

Side-effects played an important role in contraceptive consultations. During an observations, a patient asked: ‘Does this [contraceptive] have many side-effects?’ The question was met by the provider searching for the corresponding information leaflet online and reading aloud: ‘The most common side-effects are headache, tense breasts and nausea’. But uncertainty lingered; a side-effect may or may not have been applicable to this specific patient. ‘It [experiencing a side-effect] may not happen, but it’s possible’, the doctor said to the patient.

Indeed, patients would like to have certainty. One patient brought her cousin to the consultation to cope with possible language barriers. The cousin said: ‘I used to have mood swings [when taking the oral contraceptive pill]. Can we prevent this from happening to [my cousin]?’ Dr. Clara answered:

I can’t know that, but that could happen. And there is a small increased risk of breast cancer and clots in the blood, but that chance is very small. And indeed there are side-effects on mood. You can only try it and then see. (field notes, observation)

Care providers stress it is hard to predict if an individual would experience a specific side-effect. An individual could be part of the subgroup not experiencing many side-effects or fall into another unlucky subgroup experiencing headaches, or worse, breast cancer or thrombosis (called ‘clots in the blood’ by Dr. Clara).

Care providers used clinical tinkering to clear up this uncertainty. Clinical tinkering involves clinical experimentation – to see if a treatment works in a particular case – though may also involve determining what a patient needs to implement a certain solution. For participants, clinical tinkering could be used to figure out what effects or side-effects a contraceptive had on them. The process sometimes mimicked a truth experiment, as Dr. Bloem explained.

[. . .] many women attribute all kinds of complaints to being on the pill. And at first I was a little hesitant to say, ‘Well, stop [the contraceptive]’, because then I think, yeah, then you are [not protected against pregnancy]. But often the conviction is SO strong that you have to come along and you say, stop for three months and then you really have to go see if those complaints diminish, and actually you have to start again afterwards to see if they come back. (Emphasis in interview)

Dr. Bloem used ‘attribute’, like Dr. Schoon, to underscore that the link patients drew between the complaint and the hormonal contraception was not yet substantiated. One could experiment by discontinuing the treatment, seeing what happened and checking the patient’s wellbeing. The discontinuation is not completely open-ended, but somewhat formalized; the ‘attributed’ complaint is in need of substantiation to be considered a side-effect. The patient’s complaint served as a hypothesis, tested by discontinuing the treatment, seeing if the complaint subsided, and then restarting to see if the complaints return.

In consultations I witnessed tinkering in practice. When discussing side-effects, a provider could say ‘you can only try and see’, as Dr. Clara did. That would be a less formalized trial than that described by Dr. Bloem, for whom achieving certainty was important. This kind of clinical experiment was embedded in the care practice of finding a contraceptive that fits the patient.

The nurse practitioner whose sexual and reproductive health consultation hours I sat in on frequently used the phrases ‘see if it suits you’ and ‘try and see how it goes’. She sometimes used the words ‘tinkering’ and ‘adjusting’ to describe the clinical experimentation in her contraceptive care. The process of tinkering was part of the process of finding the contraceptive method that best fit the individual patient. ‘Fitting’ could entail measuring the uterus to determine fundal height so an IUD was well positioned. But it could also involve testing out which hormones the patient was sensitive to and how that affected intimacy. The hormones of a hormonal IUD, for example, could affect the patient’s libido, but the device could also impact intimacy if the IUD strings were felt during intercourse. Or a patient could experience a change in mood or simply feel ‘grumpy’ all the time, as the nurse practitioner explains. ‘Some people are very sensitive to hormones’, the nurse practitioner emphasized, and it is very unpredictable what the effects may be. ‘I do NOT know how someone reacts to certain hormones’, she emphasized. ‘We will see together what fits. We’ll try something; if it doesn’t work, then we’ll switch to something else’.

In contraceptive consultations, tailoring the treatment to the individual patient was central; the experimentation was less of a formalized truth-seeking. In some cases, truth-seeking was altogether abandoned in clinical tinkering. Tinkering then ceased to be a process of substantiation, but rather became agnostic; a side-effect could be real or imagined – there was really no way to know. Still, the care providers needed to deal with the complaints. The nurse practitioner explained how ultimately the truth of the matter became irrelevant.

Um. . . you really [should] choose something [a contraceptive method], something that truly makes you feel good. I know some people have complaints about the Mirena [IUD], about which I think. . . [whispering as though telling a secret:] I find it unlikely that [the IUD] is the cause, but if you constantly feel like something is in you and your body is working against it, then you should just remove it because it won’t work. And I don’t mean ‘won’t work’ in the sense of the contraceptive [effects] – it still works for that [preventing pregnancy]. But if you’ll constantly have the feeling that something is in your body, [then] it just won’t work in your head. [. . .] If you continually have in your mind that this thing is hanging there and it’s causing damage to your body, then I could deny that and say, ‘No, that’s not the case.’ But if it bothers you, then we need to address it. I can say, ‘It’s not like that,’ but if it’s in your head, who am I to say it’s not?

The nurse practitioner had said earlier that ‘some people are very sensitive to hormones’ and may experience more or more severe side-effects. In this quote, however, she revealed that – even though she sometimes doubts the attribution of complaints to a contraceptive – it doesn’t matter why the complaint arises. If something doesn’t ‘fit’ or ‘sit right’, whether physically or ‘in your head’, there is enough reason to try a different method and see how it ‘works’ or ‘fits’.

Here the practice of tinkering was still clinical experimentation albeit without the aim of determining if a treatment caused the complaint. The nurse practitioner actively tried to refrain from denying patients’ truth claims. She was willing to tinker and calibrate (Mol, 2006) to find which method was best for them and left it up to them to determine when something sat right or fit well.

Obstacles to epistemic collaboration

From this analysis, I identified two differences between contraceptive care providers and users that could present obstacles to epistemic collaboration or lead to epistemic tension. First, the groups had differing definitions of a side-effect. While care providers were trained to think in terms of increased risks of adverse health outcomes, users described phenomenological effects of contraception, often in imprecise, metaphorical language. This implies that care providers and users may also have assessed the severity of experienced side-effects differently. The severity of thrombosis or a stroke is medically evident, being conditions that can lead to a pulmonary embolism or death. But despite their relevance for the individual, not experiencing colours vividly, as Laura noted, or sensing that one is not in one’s body, like Antonija recounted, carry less medical significance; they are phenomenological experiences.

Second, information shared online was evaluated differently by care providers and users. For care providers, citations of information shared online triggered fears about misinformation. Their demarcation between biomedical knowledge and non-scientific claims was intended to guard against misinformation and mitigate risks in making uninformed or ill-informed choices. Anti-hormone sentiments, which may be ‘not medically justified’, as Dr. De Wilde phrased it, may lead patients to make contraceptive decisions on unfounded fears or misinformation.

For Laura and other participants, it was precisely a shared experience, that strengthened the link between their complaint and contraceptive. Under the care providers’ demarcation, their online stories were invalidated. This aligns with Gunnarsson and Wemrell’s (2023b) observation of Swedish medical authorities invalidating copper IUD side effects due to the socially mediated link between the IUD and the attributed side-effects.

Because information shared online was viewed differently, care providers’ insistence on demarcation between certified evidence and online claims runs the risk of loss of patient trust. Laura’s interview showed how disagreeing over the link between her yeast infections and hormonal contraception negatively affected her relationship with her GP. She concluded: ‘So you can tell me anything different, but I not going to [trust the doctor on that]. . .’ The fact that other women had similar experiences affirmed Laura’s disregard for her provider’s health advice, ‘for example, to say no to some advice when your doctor says “Do this.” And I’m like: Nope!’. (For the full quote see on page 8.)

Towards collaborative tinkering

The analysis revealed that contraceptive users substantiate knowledge of side-effects by combining somatic knowing with online information (as a form of collective validation) and by monitoring the changes and patterns that appear with or without treatment (self-experimentation; Gunnarsson and Wemrell, 2023b).

In demarcating biomedical knowledge from non-scientific claims, care providers drew distinctions between facts and non-scientific claims (intuition, misinformation, irrational fears and bias). This practice addressed the need to screen epistemic claims for possible factors undermining the validity of side-effects, such as misinformation from social media or a nocebo effect, and preventing users from making informed decisions. Clinical tinkering allowed care providers together with users to experiment with different contraceptive methods, discovering if an individual might be experiencing any specific side-effects.

Studies on provider-user communication regarding contraceptive side-effects (Donnelly, 2023; Le Guen et al., 2021; Stevens et al., 2023; Wemrell and Gunnarsson, 2023) link care providers’ lack of recognition of side-effects to the loss of patient trust. The analysis of the differing ways care providers and users substantiate claims reveals a similar link. The care providers in the study framed distrust in medicine – specifically, a rejection of pharmacological contraceptives – as the possible result of misinformation, lack of knowledge or a nocebo effect. In their attempt to counter this distrust by correcting misinformation, care providers may have unknowingly exacerbated it, as the case of Laura showed. Well-meant attempts to protect patients from misinformation about contraceptive side effects, then, may actually increase patients’ rejection of contraception (Donnelly, 2023; Le Guen et al., 2021; Stevens et al., 2023), as they invalidate patients’ experiences.

Inspired by literature on including patients as knowers in clinical encounters, Wemrell and Gunnarsson (2023) argue for the cultivation of epistemic humility (Buchman et al., 2017; Wardrope, 2015) to reduce epistemic injustice in contraceptive consultations. Buchman et al. (2017) define epistemic humility not only as an attitude that ‘allows room for balancing clinical evidence, professional judgement, and patients’ perspectives’ (p. 38), but as an approach calling for collaborative dialogue and partnership between patient and provider. Following Buchman, I suggest collaborative tinkering as a practice that helps cultivate epistemic humility.

Collaborative clinical tinkering, moreover, aligns well with the everyday knowledge practices of care providers who tinker in clinical settings and users who self-experiment at home. Both use a ‘try and see’ approach, as illustrated in this study by the nurse practitioner and Laura. Tinkering here involves starting or discontinuing treatment and seeing how that affects the patient. As such, clinical tinkering can provide a common ground for care providers and patients to co-create knowledge, with shared attention devoted to how a treatment affects the individual patient. Including the self-experimentation of people who use long-term treatment as part of the healthcare provision (rather than viewing it as a lack of compliance; Conrad, 1985) may help to alleviating tensions between care providers and users. In turn, disputes of knowledge authority and fears surrounding online misinformation may play a less prominent role. Through tinkering together, provider and patient may cultivate a collaborative relationship. Whether a shared truth about side-effects is reached through tinkering is of secondary importance, although patient and provider may learn unexpected things in the process.

Conclusion

In this study, contraceptive users validated knowledge of side-effects through a combination of somatic experience, online collective validation and self-experimentation (Gunnarsson and Wemrell, 2023b). Healthcare care providers distinguished between biomedical knowledge and non-scientific claims to ensure patients’ informed decision-making. In some cases they viewed their role as mythbusters (Stevens, 2018) because of the ubiquity of online misinformation. In consultations care providers engaged in clinical tinkering, experimenting together with the patient to try different contraceptive methods to determine side-effects. The analysis uncovered differing definitions of a side-effect and different views on online information between users and care providers. Care providers’ well-meaning efforts to correct misinformation may create epistemic tension, deepening patients’ distrust in medicine and rejection of contraceptives.

To navigate this tension, I advocate for collaborative tinkering. Focusing on the individual’s experience with treatment, collaborative tinkering aligns with both clinical and user knowledge practices. This approach can foster a collaborative relationship between provider and patient, potentially easing tensions and reducing authority disputes and fears of misinformation. Rather than determining a definitive truth about side-effects, the primary goal of collaborative tinkering is to cultivate a shared understanding, mutual trust and openness to finding, above all, a contraceptive that fits.